Doctors debate ovarian cancer warning signs

Ovarian cancer has long been known as the "silent killer," growing imperceptibly inside victims until the disease has spread too far to be stopped.

Doctors knew the reputation wasn't entirely deserved: Women with ovarian cancer often complained of symptoms such as abdominal pain or frequent need to urinate in the months before they received the bad news. But, because most women suffer such discomforts occasionally, it was hard to distinguish those with cancer from everybody else.

Now, Seattle researchers have come up with what may be the first early-warning system for a disease that is expected to kill 15,280 women this year, most of whom never knew they had cancer until it was too late. If women suddenly experience any one of six symptoms such as bloating and difficulty eating for more than two or three weeks, the researchers say, they should check with a doctor to see if they have ovarian cancer.

Some physicians fear that the new symptom index -- endorsed this month by 20 cancer advocacy groups -- will result in waiting rooms flooded with women suffering everything from menstrual cramps to indigestion. But Dr. Barbara Goff , the University of Washington gynecologist who helped create it, said most women can tell the difference between a difficult period and more fundamental changes in their bodies. Until now, she said, women who reported early symptoms of ovarian cancer were often given the wrong diagnosis, such as irritable bowel syndrome.

"We don't think these practitioners give women enough credit for knowing their own bodies," said Goff in an interview. "We can't be so paternalistic to say we know better and keep this information from women."

In a recent study, Goff found that fewer than 3 percent of women would be considered at high risk for ovarian cancer based on her symptom index, which requires that the symptoms be both recent and recurring more than a dozen times a month. Only a small fraction of those who are considered at high risk would likely turn out to have the disease, she said.

However, some cancer specialists say they have reservations about the symptom index, because in the absence of a definitive test for ovarian cancer, many women may end up getting unnecessary diagnostic procedures. If Goff's index rates a woman at high risk for ovarian cancer, doctors may feel pressured to do exploratory surgery to directly examine the ovaries, a procedure that requires general anesthesia and carries risk of infection, among other hazards.

"We need a test for screening and early diagnosis of cancer and, right now, we are left with a less-than-perfect index to guide us," said Dr. Len Lichtenfeld , deputy chief medical officer at the American Cancer Society, which supports use of the index despite its shortcomings.

Doctors have long hoped for a better way to detect ovarian cancer early because women are so much more likely to survive when the disease is caught before it metastasizes to other parts of the body. Thirteen out of 14 ovarian cancer patients are alive five years later if the cancer is detected before it spreads, according to the Cancer Society, while only 30 percent survive for five years if the cancer is discovered after it has spread to distant areas.

But ovarian cancer is relatively rare -- eight times less common than breast cancer -- making screening tests more likely to generate false alarms than to find early cancers. Even with mammograms, widely credited with reducing deaths from breast cancer, doctors find no cancer three times out of four when they take a sample of the suspected tumor. In one study, Swedish researchers used vaginal ultrasound to screen 805 women considered at elevated risk for ovarian cancer, and 39 women then underwent exploratory surgery to investigate suspicious tissue masses found with ultrasound. But only one had ovarian cancer.

As a result, health organizations have recommended against routine screening for ovarian cancer unless women have known risk factors such as a family history of breast and ovarian cancer.

Goff's research team sought to improve the odds of finding ovarian cancers by giving women early warning signs to watch for. In 2004, Goff found that women with ovarian cancer were five times more likely to be suffering from the combination of bloating, increased abdominal size and frequent need to urinate than women who came to primary care clinics for general health care. But, because 72 percent of women overall experienced at least one of these symptoms on a regular basis, the Seattle researchers realized they needed to provide more guidance to avoid confusion.

In the latest study, published in December in the journal Cancer, the researchers asked nearly 500 women in a cancer screening program to fill out a survey on their gynecological and gastro-intestinal symptoms. In addition, they included survey results from 55 women already diagnosed with ovarian cancer. Ultimately, 149 of the women in the study were diagnosed with ovarian cancer.

The researchers found that most of the women with cancer had noted a sudden, persistent change in their bodies within the year before diagnosis, usually centering on these symptoms: pelvic or abdominal pain, increased abdomen size or bloating, and feeling constantly full or having difficulty eating. In all, 56.7 of the women with early-stage ovarian cancer -- and 79.5 percent of those with advanced cancer -- had begun to experience at least one of the symptoms more than a dozen times per month during the preceding year.

Women with that pattern of symptoms should see their primary care doctor or gynecologist for an evaluation that could include a pelvic exam, an ultrasound, and a blood test that looks for the presence of a protein called CA 125 that is elevated in most ovarian cancer cells. Then, the physician and the woman can decide whether the patient should undergo exploratory surgery, Goff said.

"We're not saying, 'If you have these symptoms you should have your ovaries out,' " said Goff, noting that the vast majority of women who are at high risk for ovarian cancer based on the index turn out to be cancer-free.

In the long run, Goff agreed that the best solution for women would be an inexpensive, accurate screening test for ovarian cancer, noting that Yale University researchers are developing a promising blood test based on four proteins that are common in growing cancer cells. However, she said, the test is still years away from being ready for widespread use. "Until there's a test, awareness is best," she concluded.

Scott Allen can be reached at allen@globe.com.